Let's Get Physical

So today was my first visit to physical therapy. My therapist is the same one I had after a car accident just before all this started. She said the reason she recognized me was because I still have the same smile and eyes; and to think it was just last summer when we met.

Being a "former" physically active person I was hoping to dive right into the hard stuff to get my body back but I have to go slow. Right now I'm only allowed four stretches and as much walking as I can tolerate. I told her that sometimes I am so eager to get better and push myself so hard that I forget I have to turn around and make it back home. Kinda funny! She wants me to come more than once a week but it's not in the cards (credit cards). So I promised to do my exercises everyday and do my best in between visits.

I have to say it felt good to know that someone is willing to help me get back to normal. It is going to be very hard and a long road but we can do it. I just have to be patient - yeah right! I'm not a patient person when it comes to this. Granted I am more patient than before all of this happened but no where near what I really need to be.

I'm upping my steroids again. I spoke with a couple of people today who are former patients and who have doctors who actually know what they are doing and they informed me that I'm borderline adrenal insufficient at all times right now because my drugs are too low. So for the next couple of days I'm going to try to go back to where I felt better on them at least until I get a new doc. I'd hate to go into the hospital right now.

Maybe the physical therapy will help me get back some of appreciation for my body. All of this weight gain and disease has really set me back as far as my physical image is concerned. Perhaps by trying to make it strong again I can learn to appreciate what I have. It is very hard when people from my past see me and know that I don't look the same. It serves as a reminder to me how much I have changed because of this illness. I know eventually I will get back the life I had before but the reminders when I see people make that road seem daunting. Thinking about how hard daily tasks are difficult and hopefully this will give me more strength so I don't feel so weak. It is not good for your emotional health to feel so weak and not be able to care for yourself as you once did.

But for now I will stick with a little physical therapy and see what tomorrow brings.

Frustration Mounts

Today was another of frustration and I’m sad to say I am back to battling the doctors. As you know, I have been having problems and complications with my steroid taper and trying to get my adrenal glands to work properly. I called my endo again today and she blew me off essentially telling me “it’s all in my head.”

Over the weekend my blood pressure spiked again and my fatigue and pain became even greater than before. I spoke with my pain specialist and he reassured me it was due to the steroids and my adrenals not working properly. He is sending me another prescription so I don’t need to travel and I have a follow up appointment in two weeks to make sure all is working well.

So I was prompted me to call the endo hoping for some tests to get the answers I needed. I had called her last week and she basically told me to suck it up and stop the taper until I felt well again. Apparently I was wrong as she told me we ran blood work a couple of weeks ago and she won’t authorize it again. It was more than a month ago! I explained to her about my blood pressure (bp) and increased fatigue, nausea, insomnia, skin infections, etc. and she told me it was not likely to be related. Meanwhile, I had done my own research and know that these are all signs of complications from surgery and a bad steroid taper. She told me to get off my steroids and I would feel better. I commented that she had me stop the taper. The doctor agreed and told me they were my problem…didn’t she just tell me that the steroids weren’t related and not my problem? She was very confusing and I am not sure she understood herself or was listening to what she was saying. She was only annoyed that I had called again this week. Afterall, this is what she had asked me to report when I saw her last time - these are all signs of an adrenal insufficiency that could land me back in the hospital. She told me to get a physical from my primary care doc and double my bp meds…then she told me to just double them…mind you I’m on very high doses of these drugs…I’m not doubling them until I speak with a doctor who will see me first! That’s insane and I could make my bp go too low! And then she told me not to see anyone else - she would take care of me! Yeah right!

I called the primary care doc who originally diagnosed me and scheduled my physical for next week as well as just to chat and see what she thinks. At least she listens! I figure that if I have the physical and prove that I don’t have another tumor or other problems I can tell the endo to bite me! II have found another endo that has dealt with pituitary patients in the past and have an appointment with her in the next 10 days. I should at least check her out and make sure that she knows how to treat people like me…then I can dump that moron who wanted me to double meds without checking me! My primary care is amazing and I hope she will still listen to me. She should be able to help me out like last time.

Tomorrow I start physical therapy. I’m not sure it’s a great idea since my bp has been so high but I figure at this point it can not hurt. At least if I had a heart attack they would listen. I am going a couple of times and see what they recommend and try to keep it cheap. But then again, I don’t want to kill myself by doing something stupid either.

I can not even begin to tell you how frustrating it is having to fight with the docs again. I had surgery and I’m supposed to be getting better – right? I do not have the energy to wage these battles! But knowing me and my stubborn streak I will…I am just exhausted! It was hard enough the first time. I just can’t imagine having to go through all of this again! I am emotionally drained and just want to get better so I can get my life back. Is that so much to ask?

For now I’m self-treating and will take a small dose of bp meds if I get really bad and hold out on the steroid change for another day or so. If I don’t feel better soon I’ll increase the steroids since I know I feel better but it is like taking a huge step back! My head is spinning thinking about all these things I have to do all over again and all of the complications I’m having. I wish my body would show some sign of progress!

There’s always tomorrow, I guess…

Progress Halted

So I'm back where I started with the steroids...I had to stop my taper because my body doesn't want to work properly and I am at risk for going back in the hospital. The past week I have been suffering with my sodium and potassium fluctuating and causing me to have nausea, headaches, severe pain and a whole bunch of other things. The pain is the worst I think because it is so bad I can hardly think unless I take something. Often I can't sleep at night and during the day I am no longer able to go for my walks. I am going to try a walk today after I write this in hopes that I can get some fresh air as I am getting "cabin fever" again.

My doctor said to stop the taper until I feel better again and then we can start over. I wish my adrenal glands would kick back in! They are so painful right now that no pain medication can help them. Besides the fact they are making me lose tremendous amounts of water and fluid again which means my poor kidneys are working overtime.

I'm going to keep fighting though. Next weekend is my first attempt to get out of my house and the town for a vacation since all of this started. I'm hoping that a change of scenery will help renew my spirit and just give me a little space to breathe in a space that isn't full of sickness. We are going out to the country and doing some sight seeing that has little stress attached to it. I can't wait to just get away from all these reminders of all the things I have been through in the past year and a half. I guess it has been that long, I lost track and when I look at things I guess my illness (symptoms) started in January 2004 with my pneumonia. Little did I know then what changes in my life lay ahead. But hey, this coming weekend will be great! I am keeping my higher dose of steroids and will try to taper after my trip. If anything I think the trip will do me better than sitting on my butt.

Eventually I'll get off these steroids and I will feel better. I called to schedule an appointment for physical therapy even though it isn't in my budget (the copay even seems like a lot these days) to help me start to regain my physical strength and get through this steroid thing. The doctors say that once I'm off them I should feel better it is just trying to get off them and make my body work at the same time that is the tricky part.

I'm also trying to organize a few things for when I'm able to return to work in a few months (hopefully January) which helps occupy my mind and keep me focused on getting better. I have been writing a lot and reaching out to people to figure out what is next for me. My current job won't return my calls and I am guessing that when I go back they will say they don't need me and have to "downsize." It is hard to understand how people can turn their backs like that - it's not like I tried to get a tumor and then figured out that I had two. Anyway, I need to prepare for my future even if that doesn't mean a full-time return to work. I'm lucky I have been forced to take this time to figure out what I really want to do with my career even though this change will be very scary and is even harder since money is extremely scarce. If only I were rich! I know we all say that. I know money doesn't make things all good but it certainly helps in times like this. I should throw a fundraiser...lol.

Well, I'm off to try that walk and at least get some fresh air. I promise I'll start writing more now and will probably have some new pictures soon from my trip...maybe the beautiful scenery will detract from the complete change my body has gone through. I still haven't lost the weight and am very weak...let's hope physical therapy helps that part...I'm off!

Steroid Withdrawel

Well I was doing fairly well until this past weekend on the lower dose then all of a sudden it hit me. I'm assuming some of the higher doses that were left in my body have now gone away and I'm left wth the little I'm currently taking which is why I have been feeling lousy the past couple of days. I'm almost back to the way I was when I had to go back in the hospital fo sodium and potassium issues. Or maybe I just over did it this weekend and need to cut back. Either way I'm sure my doc will tell me.

I've been working on a few side projects lately and that is why you haven't heard from me. No that I've had a lot to tell you either. No exciting news, no weight loss, nothing is going back to normal yet. It's very frustrating and to think that I will have to slow my taper down is killing me since it will delay my going back to work and I really don't have any money left to be waiting to go back to work. I am pretty much flat broke and to think I have to last until at least January until I can return to work. Believe me I wish I could return to work...not that I think my job will have me since I've been out almost a year and will be out a year or more by the time I can go back...

I have a few ideas about career changes and I should be happy I have this time to investigate and see but it isn't something I can afford to do right now. So I am investigating and hope that I can get moving on a couple by the time I can return to the working world...only time will tell. Until then I have to pinch pennies and start cutting back on food and stuff until I can get things under control financially. Hopefully I can find a roommate or something that can prolong my ability to not work until my body is ready.

I feel like the entire last year of my life has been on hold and just waiting for this damn disease. And now, well it's just more waiting and hoping that soon I will be able to regain the control over my life! For now I'll do some volunteer work that I can do at leisure to fill some of my time...now if only it paid. To thikn I'm giving away stuff that I charged and arm and a leg for in the past making thousands of dollars...but it is all for bettering the world right? Maybe this will all come back to me one day and my life will finally be "normal" and without as my friends say...all this drama! God knows I have enough drama to go around!

Cleaning House

I'm moving some stuff around because I need to get a roommate very badly, that and I'm hoping my doc will let me do some yoga and gentle exercise. I see her tomorrow and hopefully she says yes so I can get back on track and then eventually try to go back to work. I'm sure I'll be fired though since they haven't contacted me only once or twice the entire time I have been out. Granted I understand they may be upset that I only worked for a few weeks before all of this happened but I didn't ask for the two tumors in my head and chest! Ok, back on track...

So I thought I would move one of my small dressers into my closet and fill it with storage stuff and then move a small roll-top desk I have into my bed room and use it for my art supplies. I'll obviously need help moving the stuff but I'm kinda sick of looking at my room and house always looking the same. Let’s face it I have been sitting in the same spot for 10 months now. Ugh! That and maybe a new set of funky sheets will make my room feel different and add some excitement to my life. Besides if I get my art stuff out from under my bed and out of the closet I might actually use it some more.

So anyway, I was cleaning out the small dresser and pulled out my shorts from last summer. My god, what a difference a year and a tumor will make. They're a size 6 and a small size 6 at that and I held them up to my new shorts and wasn't sure if I should laugh or cry. They are less than half the size of my current shorts. No wonder I feel fat. I didn't really realize how skinny I used to be until I held them out and saw them. I couldn't believe I used to be so small and used to whine about being fat...man was I crazy! So I'm sitting there trying to decide if I hang onto them or toss them...I can't believe that by next summer they will fit but everyone says as soon as I come off the steroids and other drugs and begin moving more it will all fall off. I sure hope so! So I'm keeping them and hoping they fit. If they don't fit by next spring I will toss them. Besides if I do lose all this weight I think I deserve some new clothes!

I've been doing my walks almost every night but I don't see any improvement...as a matter of fact I gained 10 pounds this week. Now I'm back up to my pre-surgery weight and it makes me so upset and mad! I hate this! I want my life back! I hate feeling like a zombie from my drugs and having no control over what happens to my body...not to mention my checking account which has suddenly been eaten alive by some alien freak (my doctors and months off work without pay)! I need to get my life back in more ways than one and this is taking a really long time…I’m so frustrated all I want to do is cry! And the sad part is I can’t make people understand…I get mad at my situation more than them but they still think I should be wandering around with a smiley face. Most days I do feel pretty happy and am doing well but I still have my days when all I want to do is sit and cry because I don’t have my life back yet. I know it sounds stupid and I should be glad I’m alive but this shit sucks and it’s not my life! I want to do what I want when I want and I even want to work but mostly I just want things to be back to “normal.”

Ok enough pity party for today!

Oh, My Aching Legs

I shouldn't complain with everything going on but as promised I have to keep everyone updated...I guess that's why they are short these days since so much more important things are going on in the US.

I'm feeling a bit more peppy towards the end of this week but my legs don't seem to want to move. Last night I went for dinner and my legs hurt so bad once I got home that I thought I was going to "lose" my dinner! And the sad part is that I didn't even walk...I drove to dinner for the first time in a while. I'm only driving about once a weeke since I'm not really supposed to be but what the heck. How am I supposed to get better holed up in my house?

I have an appointment tomorrow with the pain management doc...he thinks I'm nuts because I say I have bone pain...all of which is true because when one gets Cushing's your bones deteriorate into "old lady" bones. I went from having 20 year old bones to that of a lady whose 60+ with osteoporosis. Not something fun to deal with! And now that I'm gettting back on track the sudden surge of calcium and bone materials causes great pain. I hear it's only supposed to last a few months! UGH!!!

I hope he gives me something good and I'm asking about physical therapy next week to see if that will help...that and the massage therapy will hopefully get some of the aches out so I can start getting back into a ashape where I can handle walking a decent distance and eventually will be physically strong enough to return to work. What a concept - Yes, I want to go back to work! I just know it isn't going to be anytime soon with this pain and the amount of rehab I have in front of me. Besides, I don't want to become an addict with all these narcotics in me. I don't need another bad thing to overcome. I think by combining all these things I will be in good shape.

Okay, off to nap before I go to the store! Have a good afternoon!